Danielle   Kate   Sibbons   arrived   on   the   25th   November   2001   after   a   normal healthy pregnancy. Her   arrival   was   anticipated   with   much   excitement   by   her   big   brothers Luke   8   and   Bradley   5   and   her   grandparents,   who   were   eagerly   waiting   to welcome   what   we   already   knew   to   be   a   little   girl   to   our   family.   Her   name had   already   been   chosen   by   her   brothers   and   like   all   expecting   parents we had spent the past 9 months building hopes and dreams for her. I   had   all   the   usual   pre-natal   testing   that   goes   with   having   a   child   in   your 30’s and we were expecting a normal healthy baby girl. Her   delivery   in   the   wee   small   hours   of   morning   was   quick   but   uneventful. The   midwife   wrapped   her   entirely   in   a   blanket   except   for   her   tiny   face and   handed   her   to   me.   My   other   babies   had   been   put   directly   onto   my tummy   but   I   thought   nothing   of   this   at   the   time.   Our   eyes   met   and   I   knew I would love and protect this child forever. She had the biggest blue eyes. Then   the   midwife   said   Danielle   was   having   some   trouble   breathing   so would   need   to   go   to   the   nursery   for   a   while   just   while   the   doctor   finished his   business   then   we   would   be   reunited.   Alan   my   husband   looked   shell shocked,   I   assumed   it   was   because   of   the   speed   of   the   delivery.   The people   attending   to   me   were   also   very   quiet   but   I   assumed   that   was because they were busy.   Almost    immediately    following    her    birth    my    parents    arrived    with    her brothers   to   meet   her.   They   came   and   saw   me   then   went   to   see   Danielle in   the   nursery   before   going   home   to   get   some   sleep.   My   obstetrician went   to   see   her   also   after   he   had   finished   with   me.   He   came   back   and told   me   everything   was   alright   (the   thought   that   it   wasn’t   had   never crossed   my   mind)   but   that   she   had   some   birthmarks   including   a   largish one   on   her   neck.   Big   deal   I   thought   a   couple   of   birthmarks.   I   think   I   said something stupid like “that’s ok my other two had stork bites too”.   After   a   while   the   midwife   offered   to   take   me   to   see   her. They   wheeled   me into   the   nursery   and   my   eyes   immediately   went   to   a   crib   on   the   far   side.   I couldn’t see her face, her back was to me but I knew this was my baby. What   I   saw   was   a   baby   who   was   covered   in   black   marks,   almost   her entire   scalp,   her   neck,   a   little   on   her   face,   her   shoulder,   her   elbow,   her back,   her   bottom,   her   legs.   I   had   never   seen   or   heard   of   anything   like   it before,   I   had   no   idea   what   was   happening   to   my   baby   girl.   I   was   gripped with   the   most   horrendous   fear   for   this   child   and   at   the   same   time   filled with   such   love   and   protectiveness.   I   reached   in   to   touch   her   and   she woke.   I   fed   her   for   the   first   time   and   knew   that   I   would   do   whatever   I   had to for this baby. She was so beautiful. The   next   few   days   were   filled   with   a   blur   of   doctors,   information   and brave    faces.   Alan    and    my    mum    started    hunting    on    the    internet    for information   about   these   birthmarks   and   what   they   found   was   not   good news.   While   my   heart   broke   it   also   filled   with   intense   love,   I   knew   I couldn’t   bear   to   lose   her,   I   was   so   afraid.   I   was   also   consumed   with   guilt. What   had   I   done   to   her,   to   my   boys,   my   husband,   my   parents?   It   was   all my fault and I had ruined their happiness. Danielle's Condition I   learned   that   what   Danielle   had   was   a   birth   defect   called   Congenital Melanocytic   Naevus.   That   she   might   have   melanoma   and   even   if   she didn’t   she   still   had   a   high   risk   of   developing   it   at   any   time.   That   the abnormal   cells   can   also   accumulate   on   the   brain   and   spinal   cord   causing all   kinds   of   neurological   complications   and   could   be   fatal.   I   learned   that   it was   a   very   rare   disorder   affecting   only   about   1   in   500,000   in   the   giant form   which   she   had.   I   learned   that   the   birthmarks   also   become   hairy   and more   raised   over   time.   I   was   so   afraid   for   her,   for   us.   Would   we   lose   her? What would her future hold? Later   I   would   also   learn   that   she   will   continue   to   develop   more   of   these birthmarks   as   she   gets   older.   Now   she   has   hundreds.   The   Nevi   (as   the birthmarks   are   called)   can   occur   on   any   part   of   the   body   and   are   not   a genetic   condition.   There   is   no   way   to   prevent   them   from   forming   on   the skin or in the central nervous system. Danielle's Treatment When   she   was   one   week   old   we   met   with   Mark   Moore   a   plastic   surgeon who    recommended    immediate    removal    and    biopsy    of    the    largest birthmark and a few of the others also. At   9   days   of   age   Danielle   underwent   a   huge   operation   called   curettage with   Doctors   Mark   Moore   and   Michelle   Lodge   to   peel   her   skin   off.   She lost   a   lot   of   blood   and   spent   several   days   in   intensive   care   including   4   on a   ventilator.   I   couldn’t   hold   her,   I   couldn’t   help   her,   I   could   only   be   there for her and hold her tiny hand. The   staff   at   the   Womens   and   Childrens   Hospital   were   great,   but   it   was   a lonely   time.   I   was   lucky   I   was   allowed   to   stay   with   her   but   it   was   difficult on   the   rest   of   the   family.   It   was   Christmas   time   and   I   missed   a   lot   of   the usual   school   Christmas   stuff   and   shopping   was   a   problem.   I   couldn’t bring   myself   to   leave   her   even   to   sleep   or   eat.   Thankfully   her   pathology report came back negative for melanoma. Eventually   she   moved   to   Newland   ward   where   we   had   our   own   room. Things   started   to   feel   a   little   better   as   visits   became   easier   on   the   boys.   I don’t   know   how Alan   and   my   parents   coped   but   they   did   a   wonderful   job holding everything together. I   sat   in   that   room   thinking   Danielle   was   the   only   one   that   had   gone through this and it was lonely and frightening.
© 2015 Nevus Support Australia PO Box 262, Seacliff Park, South Australia 5049  

Danielle’s Story

By Michelle Sibbons (Danielle's Mum) published 2002 
On   Christmas   Eve   2001   we   were   allowed   to   go   home   overnight   as   long   as   I had   her   back   the   next   day.   We   made   the   most   of   our   time   together   and   it was   lovely   to   have   her   home   at   last   even   if   it   was   just   for   a   little   while.   It   was great   to   wake   up   on   Christmas   morning   with   the   squeals   of   delight   from   the boys.   Father   Christmas   truly   did   come   to   us   that   day,   when   we   went   back into the hospital, the doctors decided to discharge her to day patient status. Her   healing   success   was   varied.   Most   of   the   wounds   healed   well   and   we were thrilled with the results but her scalp refused to heal. Infections     and     a     stubborn refusal    to    heal    left    Danielle with     an     open     wound     and dressings   on   her   head   for   a year. 3   days   after   her   first   birthday she   underwent   a   skin   graft   to her   scalp.   It   was   a   success and    by    February    she    was dressing   free   for   the   first   time in her life. In    May    at    the    age    of    18 months     she     underwent     an MRI   to   find   out   if   she   had   any clusters   of   the   abnormal   cells on    her    brain    or    spinal    cord. This   was   a   frightening   time   as the    presence    of    these    cells would     greatly     increase     the risk        of        this        condition becoming   fatal.   The   MRI   was clear.   This   doesn’t   mean   that she    wont    develop    any    later but    for    now    she    is    free    of them. She will have another MRI in 2 years time. This   time   of   intense   treatment   and   the   steep   learning   curve   are   somewhat of   a   blur   for   me.   We   made   often   daily   trips   to   the      hospital   and   she   spent   a total   of   6   weeks   as   an   in   patient      and   endured   6   anaesthetics   as   well   as   a concoction   of   creams,   drugs   and   supplements   along   with   intense   pain   daily. Along   the   way   we   have   met   many   wonderful   people   including   her   plastics team    Drs    Mark    Moore    and    Michelle    Lodge,    Dr    Lachlan    Warren    her dermatologist,   Dr   Paul   Lang   her   paediatrician,   Lesley   her   social   worker, wonderful   nursing   staff   (   including   her   favourite   Matt   )   and   many   other wonderful caring people who have made a great difference in her life. I   will   always   be   deeply   thankful   to   those   people   who   have   cared   for   her   and for us.   Danielle    will    face    a    lifetime    of    medical    treatment    for    her    condition    as suspicious   areas   need   to   be   removed,   excess   hair   growth   needs   to   be   dealt with,   skin   grafts   need   to   be   maintained,   cosmetic   considerations   need   to   be addressed,   MRI’s   need   to   be   done   and   a   host   of   other   things   we   have   yet   to discover.   Danielle   has   been   left   bald   on   the   majority   of   her   scalp   and   while she   loves   her   hats,   this   in   time   will   also   need   to   be   dealt   with   as   she   can   not get   sun   on   her   head.   Perhaps   plastic   surgery   can   help   her   down   the   track or perhaps she will choose hats or wigs. What I have learnt Danielle   will   face   a   life   with   unusual   challenges   in   our   ‘lookist’   society   but often great character is built from less than ideal circumstances. Along   the   way   I   have   learnt   a   lot   about   tolerance,   compassion   and   strength of character. I   have   learnt   that   this   world   is   filled   with   good,   kind   and   caring   people   just as   it   is   filled   with   cruel   and   judgemental   people.   I   choose   to   surround   myself with   the   good   and   ignore   the   latter.   I   am   developing   a   thicker   skin   as   time goes   by   but   the   stares   and   comments   are   still   difficult   to   take   at   times.      I hope   that   I   will   be   able   to   teach   Danielle   to   love   and   accept   herself   as   she   is –   a   truly   wonderful   person.   That   she   will   be   strong   enough   to   cope   with   the inevitable   barbs   of   society   and   like   me   chooses   to   surround   herself   with good people leaving the rest to their shallow lives. Not   a   day   has   gone   by   that   I   have   wished   this   didn’t   happen   because   if   it had   never   happened   we   would   never   have   had   Danielle   in   our   lives   and   I am thankful everyday that she is in our lives. Of   course   that   doesn’t   mean   that   if   I   had   a   magic   wand   I   wouldn’t   wave   the nevus away but that is a part of who she is and I think she is just perfect. The hope Looking   for   information   on   the   condition   I   trawled   the   internet,   thankfully coming   across   a   support   group   for   the   condition   in America   with   nearly   800 world wide registered members. I found answers and comfort as well as friends there. They   gave   me   some   email   addresses   of   other   families   in   Australia   whose children   had   the   same   condition.   I   contacted   some   of   them   and   eventually when   Danielle   was   around   6   months   old   an Australian   based   support   group was   started   with   3   members.   That   has   now   grown   to   around   50.   Far   more families    than    I    ever    believed    were    affected    by    this.    The    support    and friendship    given    by    this    group    is    invaluable    and    we    have    all    benefited immensely from our contact with each other. My   hope   is   that   we   can   bring   together   children   with   this   condition   so   that they   know   they   are   not   alone.   They   face   huge   medical,   social   and   cosmetic hurdles and it is important that they have a friend who understands. I   am   currently   working   on   an   update   to   this   story.   Danielle   is   now   13   years old. Feb 2015  
ABN: 23543860400
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